CW: Medical research, descriptions of physical illness.
I hope you’ve been doing great. I’ve really appreciated being able to prepare my blog in the week, too, so I don’t feel too caught out if I am severely lacking in spoons on a Sunday. Don’t worry, though, I’ll still post them on the day they’re set to come out.
Vaccines and Research
As I wrote in March; last February, my partner received a letter that he could receive his first Covid-19 vaccine. That was a surprise, we didn’t know he was in a tier higher than me. I was the one on benefits, who was reducing medication and was overall the more clinically vulnerable of the two. Odder still, his 60-year old parents hadn’t heard about their shots either. We believe it might have something to do with the operation he was still supposed to have at some point (more on that next week).
He got his first shot and seemed to be doing well into the evening. Then at about 2 AM, he woke me up telling me he had a splitting headache and felt really unwell. I was too sleepy to respond coherently, sending him back to bed. At 5 he woke me up again. He was feeling awful, sweating and feeling worse than he’d felt in a very long time. We went downstairs and looked at the notes given to him by the GP surgery. His breathing sounded clean, so Covid was out of the question. He just had strong side effects from the drug. He was nervous about calling in sick, but I made him send an email saying he was unwell due to the Covid vaccine.
The next 36 hours, he gradually improved. He spent much of the first day asleep and I took care of him. By the evening of the second day, he was fine. There was a moment on the first day where he just held me for a hug and said that he never thought anyone could love him that much. It was out of character, and absolutely adorable.
Why did he have such a strong reaction? Well, we don’t know. What is known is that his reaction falls well within the expected reactions to the Covid-19 vaccine. That’s a good thing, but the point is that there is a difference in reactivity to drugs for autistic people. And we don’t know why. This is part of a larger problem within academic research, that medicine uses normative standards that, by definition, most people don’t meet.
Additional to the many other things I do as an autistic activist, I work with Autistica as a part of the Insight Group. Autistica, since tearing itself loose from the clutches of Autism Speaks in 2010 (oh we’ll get to them, don’t worry), have turned themselves into an autistic-led and majority-autistic research charity that works with the best autistic, ND and allied researchers to challenge the still mostly “cure-based” research that occurs for the benefit of anyone but actually autistic people. Since I visited Autistica’s Discover conference in 2019 representing Oxford Health, I have been connected to their work. I am now on the steering committee of two pieces of research into autistic people. I also regularly take part in research that seeks to benefit our communities.
One of the pieces of research I work for surrounds autistic bodies and how we respond to medication. There has barely been double-blind research into what medication does to autistics. I personally have a strange relationship with anaesthetics (more about that next week!), others have other responses to other drugs. The results are potentially deadly.
The following video is the NHS inhouse Oliver McGowan Mandatory Training in Learning Disability and Autism. Please be advised that the following video comes with significant content warnings for descriptions and images of one of our community in significant distress. Oliver died due to negligent care and overmedication, where his seizures (he had epilepsy) and autistic behaviour were seen as psychotic symptoms that necessitated the use of anti-psychotics.
Paula McGowan is absolutely right. With adequate training (or, for that matter, actually autistic clinicians!), Oliver would still be here today. She states she is not interested in blaming any specific clinicians if they hadn’t undergone any training. This should have been provided under the Autism Act 2009 and the Disabilities Act 2010. That hadn’t been done, which is one of the main failures that came to light in the Parliamentary Enquiry 2019.
Yet the response from clinicians, justifiably, is ‘based in what research?’ They’ve got a point. One issue that Paula McGowan didn’t discuss was that Oliver’s sensitivity to antipsychotics was potentially due to his autistic neurology. Since the medical system allocates care based on what it sees as the ‘average’ person, that by definition does not include people with disabilities and neurodivergent folk. Worse, there is simply not enough research out there on how medication impacts our bodies. This results in what are euphemistically called ‘accidental deaths’, where autistic people simply die due to medication that would have been totally ok in a neurotypical body.
I myself was overmedicated in 2012, being given a wide variety of drugs to “settle” myself and reduce depression and anxiety. Myself, I wanted to become normal; at all costs. Whatever the intentions, I was never taken off those drugs and stayed on 4 μg of clonazepam, 600 mg of quietiapine and 20 mg of escitalopram for 3.5 years, as well as more benzodiazepines for sleeping. Oliver received those too, on top of the anti-psychotics. This combination triggered his seizures and killed him in the end. Obviously, I was incredibly fortunate. Though it took me nearly a decade to get to the right level of medication (and don’t you readers of this blog know all about that!) I am still here. Others have not been so lucky.
The lack of direct impact on my mental state by the medication I was given and the over-reaction to other medicines is important. Doctors know (or should know!) that autistic people are likely to hypo- or hyper-reactions to medication that neurotypicals take without problems. However, why that is, is still a mystery. That’s why the work I play a small part in, on the steering committee, is so vital.
We can’t do without research on how autistic bodies work, let alone our minds. In order to lower the unacceptable death rates in our community, we need to know that the health care we access has been tested on people like us. Autistics who are queer, from minoritised backgrounds and/or assigned female at birth need that too. There needs to be much wider testing, and foreground the very community the research aims to support.
How do we do that, though? My friend Colin Larkworthy is an autistic research professional. I asked him about what he would like to see change:
I find that public engagement research with that empowers people with Additional Support Needs (or PER-ASN) in university trials speak has been severely lacking. This is mainly due to the necessary criterion of finding healthy adults with no psychiatric conditions. Yet I find this somewhat disadvantageous to the cohort of autistics who are interested in this field and are willing to give time, energy, experience – even at their own potential expense. These people are motivated to do so for the good of science and to provide a better future for individuals who come after us.
I do find it quite illuminating that no one has thought of including this cohort of individuals, as there is so much to give. Yet, from a psychological standpoint, researchers have to rely on a clinical assessment that decides whether or not you should take part in research. Since this clinician is only one person and relies on someone’s judgement, this judgement is subjective. Whatever decision gets made should be based on the person’s history and always in consultation; not just with the persons general practitioner but the individual too. Not all autistics have depression or anxiety; though these are such common co-occurring conditions that they should not restrict autistics from taking part by rule.
Rather, an autistic person’s admittance to a trial should be based on the severity of the underlying condition at the point of enrolment. Their involvement needs to be subject to thorough and continuous assessment with the participant and the clinicians involved in the decision-making. Thus, if the individual reaches a clinical point where they must stop, they should always be allowed to withdraw, safely, with the collaboration of a clinician. Simply put: the safety of the participant, at this point, needs to be valued over the scientific need. Despite recent improvements in the system, I have seen consistently downward trend of lower and lower individual participation of people with support needs.
For example: if you’re deaf and autistic and these are the only conditions you have, shouldthis exclude you? I say: “No! Definitely not!” Yet this person won’t be invited on. Myself and some like-minded colleagues are on a crusade to try to make this change to research practices in small steps. Alas, this will take time. If we can get even one person with ASD or any ASN into trials and accepted on eligibility then this is a success.Colin Larkworthy
Colin is right, we need to reassess the approach we’re taking towards the involvement of people with lived experience. Too often, the more systems are put in place to protect participants, the more they end up working as barriers to entry. Not for the neurotypical, but for the very people these systems are here to protect. There is a fear of legal repercussions. It shouldn’t be that the legal protections we have fought so hard to acquire end up excluding us altogether.
Misdiagnosis for a variety of disorders is common in autistics. Hell, autistics assigned female at birth wait up to 5 times longer for an autism diagnosis than their AMAB counterparts; let alone any others. This month is Ehler Danlos Syndrome Awareness Month. EDS is a very common co-occuring condition for autistic and neurodivergent folk. I will let the wondrous Jessica Kelgren-Fozard explain more.
We have equal rights to health care as neurotypical people. Currently the physical and neurological difference that can cause divergent health outcomes are not sufficiently understood. That is why more research should be opened up to actually autistic and disabled participants. We’ve got a lot to learn.
See you next week!